Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.
Today’s prompt reads as follows:
Wordless Wednesday…We all know a picture is worth a 1,000 words. Post/share a picture that relays a message or story to the viewer
Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.
Today’s prompt reads as follows:
Dear 16-year-old-me….Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?
This particular post is one which is both extremely personal and difficult to write. Life for me was extremely difficult for me when I was 16 – I didn’t really have any friends, I was experiencing depression and anxiety as well as living with symptoms of the neurological condition even though it was undiagnosed at that time. As you can imagine was not a very happy time for me at all. Now, I look back at that time in my life, I realise how much I have learnt about myself and life in general since then and furthermore how far I have come since that difficult and dark period in my life. And, so there are so many lessons that I would share to my 16 year-old self, given the chance. Here is a letter that I have written to my younger self.
Dear Rhiann,
You may not believe this but this letter is from you but a you from the future. Yes, that is right, as I am writing this I am actually 28 years of age and the year is 2014. I am actually writing this letter just less than two weeks before going on a cruise around the Mediterranean – yes, that’s right – I (and the future you!) will finally get to experience the beauty and history of Italy; a place which I remember you have always wanted to visit. So, that is one lesson that I would like to share with you – that although you may not realise it now, and despite how life is difficult for you right now, there are still many good things that are and will happen during our lifetime. That even what may seem completely impossible right now, because of the way you are feeling and the severity of the dizziness that I know you are experiencing, the impossible is still within your grasp. The trip may not be easy, and will at times be extremely difficult but I promise it will be so worth it.
I know you are going through a very painful and difficult time in your life, having formally been diagnosed with depression, and having to start taking antidepressants a couple of days before your sweet sixteen. Writing this, I remember how sick they made me feel for the first couple of weeks, only being able to eat very little before I felt full. I also remember the incredible loneliness I felt back then, especially during school, having no friends and walking around in a daze, trying to pass the time until lessons started back after lunch. But I want to reassure you and let you know that things will get better and there is so much more in life for you to enjoy and experience.
I also wanted to share a secret with you – the dizziness that you are experiencing? It’s not in your head, and you are certainly not imagining it as some doctors have led you to believe. Because of the rules of letting me write this letter to you, I am not allowed to tell you what is wrong, but there is an explanation for it. So, please don’t listen when the doctor’s keep telling you that the dizziness is psychological and a result of an anxiety disorder. Advocate and fight for yourself and your health instead of being timid and compliant like we are, as well as putting doctors on some sort of pedestal because they have had professional training and “they know what they are talking about”. One thing that I have learnt through years of navigating the medical field is that doctors are not always right; they are not infallible and they make mistakes. Listen to that voice inside your head that knows that something is wrong and don’t give up on finding answers to the reason behind the dizziness. Please keep fighting for answers. And don’t give up and lose hope that the answers will never come, because they do – it might take some years in the future but they do come. Trust me.
I cannot say it isn’t going to be easy, or that it’s going to get better and you are going to live a full and normal life, but I believe that you are stronger than you think you are…and you can handle a lot more than you think you can…
And the loneliness you feel – it will go away, you are going to find people who will accept you for who you are, friends that are going to support you in times of need. I remember at sixteen being teased and ridiculed for who you are– just remember that no-one has a right to make you feel that you need to apologise for who you are. Don’t be ashamed to be yourself… You will find people who love you for exactly who you are and make you feel important and valued. It won’t happen overnight but those people are there waiting to find a wonderful friend like you are.
Before I forget – the heaviness and stiffness that you feel in your legs? The feelings that have been with you, since you can remember? Well, those feelings, they aren’t normal and isn’t something that everyone experiences…Maybe mention this at your next doctor’s appointment.
And good luck for your GCSE exams in a couple of months – not that you need it, you are going to do just great. You probably won’t believe it, but you will. Stop doubting yourself. Next stop will be your A-Levels, and then who know maybe even to University 😉
Take care of yourself and cherish this letter – keep it as a reminder for hope and the knowledge that life will get better and that everything is going to be OK.
From
Rhiann (aged 28)
Living with a neurological can be difficult – at times, it can be bearable, with symptoms although always present, they are however manageable.
At other times, however, symptoms are out of control; life feels as if you are on a battlefield – your condition and its symptoms are at war with your brain and the rest of your body.
[Tweet “When symptoms are out of control, it can feel you are at war with your body”]
During recent times, my experience living with a neurological condition has been the latter – with symptoms becoming out of control, and everything being a struggle.
I think that what has been particularly tricky recently is because all the symptoms that I experience are out of control all at once. The dizziness has yet again been very severe, which has left me feeling incredibly nauseous a lot of the time. And not forgetting the severe trembling and pain in the legs, oh and not ignoring the terrible fatigue; hampered by episodes of insomnia.
Of course, it is not pleasant when even one symptom is out of control but is at least a lot more manageable dealing with one such symptom than several symptoms at once.
So, how do we cope when our conditions are out of control? How do we deal when we feel at war with your own body?
I have learned that often we need to hold on. Hold on until it passes.
As I would like to believe all bad times, whether it be because of a neurological condition, another chronic illness, bereavement or even a break-up, passes with time; just as clouds pass over to reveal bright, beautiful sunshine.
I choose to hold on to hope – the hope that it will pass.
[Tweet “I have learned that often we need to hold on. Hold on until it passes.”]
But just as much as we need to hold on – hold on to the hope that it will get better; those symptoms will improve given time, we also need to let go.
To let go of everything that we cannot change.
As much as I realise that we should let go of the worry and sadness of things we cannot control; I understand that it is often easier said than done. I admit that I find it difficult at times, and find myself getting upset with what I cannot do or find challenging as a result of the neurological condition. However, I try my best to keep the negative thoughts to a minimum and attempt to see the silver lining in the particular situation (e.g., not being able to get out of bed). I mean, who doesn’t love an excuse to have a PJ day and watch films all day?!) and accept that this is my reality.
[Tweet “We often need to accept the reality of our chronic illness and let go of things we cannot control.”]
There are certain aspects of my condition that I cannot control, such as the symptoms and the effects that these symptoms have on my life. I do have control, however, on how I choose to deal with the condition. It is not easy, however, especially when the symptoms are very severe. The way that I choose to deal with this illness is through my writing and sharing my experiences with others, volunteering for great causes, reading books, laughing and talking with friends, and watching my favourite films and television programmes. Those are some of the activities that I do to make me happy and help me forget that I am a person living with a neurological condition as well as distracting myself from the symptoms that haunt my life every day if even it is for a short time.
[Tweet “There are aspects of chronic illness that we cannot control, but we can control how we deal with it.”]
So, to help me cope with living with a neurological condition, I both hold on and let go! I hold onto the positives and let go of everything which I cannot control. How do you cope with the bad times and dealing with a life-long illness? How do you hold on or let go when life is difficult?
Hello to all my readers
Sorry that I have been quiet recently and a distinct lack of posts from me. Recently, I have been struggling with fatigue, and as well as this have had several hospital appointments which follow the appointment with a consultant specialising in audiovestibular medicine. For those who do not follow my blog, or who do not know what audiovestibular medicine is, it is a branch of medicine which specialises in the diagnoses, medical treatment and rehabilitation with disorders of hearing and balance. Doctors who specialise in this area, concentrate on patients with a variety of different problems including dizziness, hearing loss, tinnitus, speech disorders and abnormalities in eye movements.
My first appointment with the registrar back in November, revealed a problem mentioned above. He noticed that whilst following his pen with my eye, there was a slight delay with my movements which indicated a neurological problem. The doctor referred me to have some balance tests conducted to determine whether the dizziness is due to a vestibular dysfunction (inner ear disease) or not. Here is a video which outlines the VNG test:
The test, which happened a fortnight ago was not pleasant and afterwards the dizziness was worse. Last week, I returned to the hospital for the results…
During the consultation last week, I was asked to perform a test was I was not able to perform the previous week during the VNG test. This test is known as the Diz-Hallpike test and involves the patient lying on a table with the head hanging over the end of the table. The doctor will then turn your head 30° to 45°. The doctor during the test will watch your eyes for involuntary eye movements known as nystagmus. The timing and appearance of the vertigo and nystagmus determines whether the vertigo is caused by an inner ear disorder or the brain.
After completing this particular test, my parents and I were taken back to the consultant’s room and were unfortunately informed that an inner ear disorder have been completely ruled out, and that there were some abnormalities during some of the tests which indicated a problem with the central nervous system, i.e. the brain. We were also informed that there is little that can be done, and although they are sending me to a rehabilitation therapist to learn some exercises to try and ease the severity of the dizziness, the consultant was not confident that they would help.
This was obviously not the outcome that we were hoping for. It is not the first time that I have been told my a medical profession that the dizziness is very likely caused by a neurological condition; and it is not the first time that it is not anything that they can do to treat the dizziness – however, every time that I hear these words, it is like hearing them for the first time, even after accepting them after a previous appointment. In addition, after repeatedly hearing that the dizziness is a life-long symptom that I will have to deal with, a little part of me still gets extremely upset and despondent. I have always realised that the dizziness is very likely a neurological problem, and very unlikely to go away but after having it confirmed after various hospital appointments is still feels as if the small glimmer of hope that is inside of me becomes extinguished after hearing those words again and again.
Living with the dizziness, is like living with a permanent shadow following and lurking behind me wherever I go. Always present and ready to strike at anytime. The dizziness at present is constant, as well as being severe and at times debilitating and coming to the realisation that it is life-long is a hard concept to get my head around and even harder to accept. There are a number of people that has told me to hold onto hope that there is someone out there who could help me and that there is something that can be done – however the question is; is it wise for someone with a chronic illness after being told that it is a life-long condition to hold onto hope that a cure is out there? Is holding onto such hope, only going to lead to more heartache and upset? Is it best however, to accept the reality as it is, and move forward with your life as the best you can despite the limitations that the chronic illness places upon the life of the sufferer? As Joseph Campbell said “We must be willing to let go of the life we have planned, so as to have the life that is waiting for us”. So, does keeping hold onto hope of some kind of cure, stops us from living the life that we may have not planned, but our new reality?
Do I go in hunt for a cure for the dizziness, which may not even be out there? Or do I simply learn to live and accept the dizziness as a constant part of my life. It is very hard to accept that this dizziness may never go, and honestly it has really knocked my confidence on going out, but more importantly on going on our cruise in May. If the dizziness is this severe then, how will I ever be able to enjoy myself? Will I be able to cope with the dizziness whilst on holiday? These are the questions that are currently running through my mind.
Simply losing hope but attempting acceptance…
